Patient Stories

Patient Spotlight: Trevor Vail

Trevor and his siblings.

My little brother Trevor is 13 and has NF1. In fact, so does his dad, Kenny and other members of the family. No one in the family had any idea that they had NF1 until one day when Trevor was around two years old, my mom, Kenny, and Trevor were at a restaurant. A lady came up to my mom and asked if Trevor had NF1. My mom had no idea what she was talking about. She then asked if Kenny was Trevor’s father, to which my mom replied yes. The lady said that Kenny had NF1, and that my mom should get Trevor looked at to see if he had it as well. That lady has become our guardian angel, and even though we don’t know her, we are very thankful. After that odd encounter, my mom started noticing some delays as Trevor got older. She decided to do some research and learn about NF1, curious to see if he really had it. She talked to a doctor and Trevor was diagnosed with NF1. A friend of my Mom’s did hours of research to find the Washington University Neurofibromatosis (NF) Center, which is four hours away. Trevor goes for checkups once a year at St. Louis Children’s Hospital. Because of the NF Center, we have learned so much about NF1. It’s really nice knowing that there is a place where we can go for answers and help.

Trevor playing for the Midway Vikings!

When Trevor started school, he tested borderline on his tests, and it was a struggle to get him assistance for the first couple of years. The school finally figured out a way to get him an IEP under a special medical condition, and they found ways to assist him with his struggles. Mom signed Trevor up for little league football in order to help him with hand and eye coordination, and to give him a social setting to be with the other kids. They told the coaches that he did not need to play in the games, and could sit on the sidelines. But the coaches found a way to put him in, and he’s played ever since. Trevor joined the Cub Scouts when he was in First Grade. He does all the activities, and even sells candy bars at the gas station to raise money for camp. He is an awesome salesman, and has learned several salesman skills from practicing. He crossed over to the Boy Scouts, and continues to work hard to complete activities and merit badges. It is not easy because of his learning disabilities, but he keeps working to overcome these challenges. He has gone to Rotary Camp, and absolutely loves it. Someday, he’ll go to the Boy Scouts camp at Bartle with his brother, Alex.
Trevor had some rough times, and had his share of being picked on for being different. Mom feels that being active and letting others know about NF1 will be the best for Trevor. As Alex always says, we want Trevor to be treated with kindness, and understanding. We just ask you to take some time to get to know him….he might even sell you a candy bar!

Participating in Boy Scouts helps Trevor improve his Social Skills.

Trevor is going to be in the 7th grade next year, and it’s going to be a big change for him since he will start switching classrooms in our school. The teachers have been understanding, and they have even planned ways to make it easier for him. As his older sister, I have certainly learned a lot from him. I’ve completed research and I have written papers about NF1, so that the teachers in high school have an understanding and can prepare for when they have him as a student. I love having Trevor in my life. It’s always an adventure, and watching him learn and grow has been fun. He may go about things differently (he is very literal), but he’s really smart and very curious. He loves learning and wants to become a writer someday. I believe that he will!
-Written by Katie Dempsey